Tackling organ donation among minority ethnic communities in the UK—a whole systems approach

Randhawa, Gurch; Gardiner, Dale

doi:10.1093/bmb/ldac008

Cited by 13 publications

(23 citation statements)

References 10 publications

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“…16 Therefore, while the sample was not representative of sex, it was broadly representative in terms of ethnicity. Evidence suggests that there is a complex relationship between sex and organ donation 29 and that ethnicity and culture are important factors in organ donation 30 Additionally, a considerable proportion of the participants were already registered as an organ donor (opt-in 52.1%; deemed consent 10.3%; opt-out/ not sure 0.3%). Generalisability beyond the current sample for these reasons may therefore be limited.…”

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confidence: 99%

Attitudes to Organ Donor Registration in England Under Opt-Out Legislation

et al. 2023

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Introduction: In England, everyone is considered an organ donor unless they have registered for opt-out donation. Research Question: This study evaluated positive statements and negative affective attitudes against anticipated organ donor status and whether the order in the attitudes and statements presented impacted organ donor intention under an opt-out system. Design: A quasi-experimental mixed between-within design was employed with participants assigned to 1 of 2 conditions. Participants in the first condition received negative affective attitude statements followed by positive statements. This was reversed in the second condition to combat ordering effects. Participants ( N = 679) were asked about their donor status under an opt-out system. There were three groups: opt-in (actively), opt-out/not sure, and deemed consent (no objection). Organ donor intentions were measured at three intervals: baseline, post-positive statements, and post-negative attitudes. Results: Approximately 10% of participants would opt-out or were unsure of their intentions to be an organ donor under an opt-out system. Significant effects were found in both positive statements and negative affective attitudes. All groups expressed greater medical mistrust and were most influenced by cognitive attitudes. Conclusions: Under the opt-out system in England, it is anticipated that the majority would actively opt-in or have no objection to being automatically registered as an organ donor. Public health campaigns would benefit from promoting the most influential positive statements and refuting the most detrimental negative attitudes to increase intentions of those who plan to opt-out or are unsure.

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Attitudes to Organ Donor Registration in England Under Opt-Out Legislation

et al. 2023

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“…Increasing the number of live donations is seen by health authorities as vital to help address the substantial inequalities apparent in organ donation and transplant. In the UK people from Black, Asian and minority ethnic backgrounds are overrepresented on the transplant waiting lists, overrepresented on the opt-out organ donor register, and are more likely to say no to deceased organ donation ( 57 ). Improving the uptake of live donation across these populations is widely agreed will do more to help level-up inequalities across these populations than any other single intervention ( 1 – 4 ).…”

Section: Discussionmentioning

confidence: 99%

A machine-learning approach to estimating public intentions to become a living kidney donor in England: Evidence from repeated cross-sectional survey data

Boadu

McLaughlin

Al-Haboubi

et al. 2023

Front. Public Health

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BackgroundLiving kidney organ donors offer a cost-effective alternative to deceased organ donation. They enable patients with life-threatening conditions to receive grafts that would otherwise not be available, thereby creating space for other patients waiting for organs and contributing to reducing overall waiting times for organs. There is an emerging consensus that an increase in living donation could contribute even more than deceased donation to reducing inequalities in organ donation between different population sub-groups in England. Increasing living donation is thus a priority for National Health Service Blood and Transplant (NHSBT) in the United Kingdom.MethodsUsing the random forest model, a machine learning (ML) approach, this study analyzed eight waves of repeated cross-sectional survey data collected from 2017 to 2021 (n = 14,278) as part of the organ donation attitudinal tracker survey commissioned by NHSBT in England to identify and help predict key factors that inform public intentions to become living donors.ResultsOverall, around 58.8% of the population would consider donating their kidney to a family member (50.5%), a friend (28%) or an unknown person (13.2%). The ML algorithm identified important factors that influence intentions to become a living kidney donor. They include, in reducing order of importance, support for organ donation, awareness of organ donation publicity campaigns, gender, age, occupation, religion, number of children in the household, and ethnic origin. Support for organ donation, awareness of public campaigns, and being younger were all positively associated with predicted propensity for living donation. The variable importance scores show that ethnic origin and religion were less important than the other variables in predicting living donor intention.ConclusionFactors influencing intentions to become a living donor are complex and highly individual in nature. Machine learning methods that allow for complex interactions between characteristics can be helpful in explaining these decisions. This work has identified important factors and subgroups that have higher propensity for living donation. Interventions should target both potential live donors and recipients. Research is needed to explore the extent to which these preferences are malleable to better understand what works and in which contexts to increase live organ donation.

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“…For example, uptake of advance care planning has been found to be low amongst older people from cultural or ethnic minorities, [20] and there are long-standing inequalities related to organ donation and transplantation in the UK. [21] Our proposal could be viewed as undesirable if it risks increasing or perpetuating these inequalities. This does not provide a compelling argument against our proposal, however, but rather speaks to the importance of targeted campaigns to increase awareness, engagement and uptake amongst those groups who may currently be lacking in these regards.…”

Section: Potential Disadvantagesmentioning

confidence: 99%

Proposal to support making decisions about the organ donation process

Moorlock

Draper

2022

J Med Ethics

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In this paper, we propose a novel approach to permit members of the public opportunity to record more nuanced wishes in relation to organ donation. Recent developments in organ donation and procurement have made the associated processes potentially more multistaged and complex than ever. At the same time, opt-out legislation has led to a more simplistic recording of wishes than ever. We argue that in order to be confident that a patient would really wish to go ahead with the various interventions and procedures that now accompany organ donation, more nuanced information than a simple ‘yes’ or ‘no’ may be required. This is of particular importance for donation after circulatory death, where some interventions to facilitate donation occur when the patient is still alive. We propose the implementation of an online form to allow people to record more nuanced wishes in relation to donation, including an indication of competing wishes and how these should be weighed into decision-making. We argue that this approach will promote autonomous decision-making for the public, potentially reduce difficulties that family members encounter at the time of organ donation, and should make medical staff more confident that they are truly acting according to the wishes and best interests of their patients.

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Tackling organ donation among minority ethnic communities in the UK—a whole systems approach

Cited by 13 publications

References 10 publications

Attitudes to Organ Donor Registration in England Under Opt-Out Legislation

Attitudes to Organ Donor Registration in England Under Opt-Out Legislation

A machine-learning approach to estimating public intentions to become a living kidney donor in England: Evidence from repeated cross-sectional survey data

Proposal to support making decisions about the organ donation process

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